Special Needs

Tomorrow is the big day!

Tomorrow is DD1's EMG testing.  It has been scheduled since November, but we knew she needed it in August (it took that long to get into the see the dr who ordered it & is performing it).

I'm nervous.ish.  She will be put under again and from the way the nurse described it when she called Thursday it's not the typical way we are used to dealing with it.  (IV before she goes under, not after) but i've talked to her about it the past few days and she seems OK with it right now.  I'm glad she won't have to experience the pain associated with this test, but jeez anesthesia #20.  At some point it just seems excessive (like oh 15 times ago? Lol) 

I am thinking we should get results tomorrow since her neuro is the one performing the test.  I'm not sure what to expect, on one hand I don't think we will find anything out, and they will solidify her EDS as the cause for most of her pain.  OR we will find out she has a neuromuscular issue & then DD2 will have to do all of this testing as well.  I just don't know.  They are doing some labs while she is under as well, for some mitochondrial things, I believe.

I'm ready for this whole ordeal to be over but at the same time, i'm well aware that our answers..may not be real answers.  And i've still got a 4yo crying hysterically that her legs hurt/feel funny/tickle/itch who can't run/play without aggravating that issue. 
DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3

Re: Tomorrow is the big day!

  • Good luck today! Hopefully everything goes smoothly!
    To my boys:  I will love you for you Not for what you have done or what you will become I will love you for you I will give you the love The love that you never knew
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